Long GCA tx

[Spanky2019]

Treated since April for gca, also have osteoporosis & gastro disorders. Anyway, I think I am finally turning a corner on the gca & prednisone effects. I was at 80mg about 2 + weeks ago. I know I need to start keeping track. He dropped to 60 then 50 mg, then 40 mg. I don't feel bad. I see how on forum tapering too quickly is terrible for so many. I haven't hardly been able to walk, bad arm & hand tremors and that is all much improved. Still have weak lower back and wobbly legs but not as bad. No headache, actually no pain today. So, some of you know this has been complicated by other illness, but are bad side effects inevitable if he continues to taper at this rate? I have eye test later this week & I suspect if that goes well Dr will cut pred again. I was too shakey to do the visual field test properly a couple weeks ago. I actually feel better the last few days than I have for months. Hoping it will last.

[DorsetLady PMRGCAuk volunteer]

Hi,

Initially with GCA you can reduce fairly quickly - or a least in bigger drops - but from what you’ve said you have reduced very quickly - from 80mg to 40mg in less than 3 weeks. Is that correct? If so, then you need ease off a bit now.

I would suggest 5mg a time and certainly no quicker than every two weeks, longer would be better, otherwise you are likely to go below the level you actually need. It’s very easily done, and once you’ve gone below what you need it’s sometimes difficult to get back on track easily.

Good that it’s gone okay so far, but don't push your luck!

[Spanky2019 in reply to DorsetLady]

Thank you. OMG, I want this to work. I don't know how Dr will react if he says faster taper and I suggest different. We've never gotten this far. I've been treated by this rheumatologist since April (I think). I know you "first responders", including poopadoop, Pmrpro, SnazzyD, blearyeyed... know your stuff.

[Blearyeyed in reply to Spanky2019]

I agree with Dorset Lady , we are talking GCA , it's even more important to take care on the way down from 40mg , especially with the other health concerns at play.

Have the eye test , and try and relax .

When you see the GP , listen to their view , but if it not something you are comfortable with , and do not feel confident that you can maintain your recovery on , tell them.

Take a print out of the taper method that is recommended here ,,and has worked for fellow sufferers to give to your GP , if they have it for their records you could be doing a big favour for other sufferers going to your surgery in the future too.

Show the GP and tell them ( if they haven't given the advice on tapering that you receive here from DL and the gang ) politely , but firmly , that you would prefer to try this method of tapering as recommended by others , as it seems to work , but that obviously you would be willing to review things as you go and that you hope they will agree and support you.

If they will not , and persist on trying to get you to reduce too quickly , it would be worth asking if you could have a second opinion .

Good luck , and try and keep as calm as you can until things are sorted out , just this last step to go xx😘

[DorsetLady PMRGCAuk volunteer in reply to Spanky2019]

Hi, here are some slightly different “official” tapers which you might like to look at before you see Rheumy again. Personally I think they are all optimistic in the initial reducing every two weeks at higher doses to put it politely -

BSR Suggested tapering regimen -

40-60mg prednisolone continued for 4 weeks (until resolution of symptoms and laboratory abnormalities).

Then dose is reduced by 10mg every 2 weeks to 20 mg.

Then by 2.5mg every 2-4 weeks to 10mg.

Then by 1mg every 1-2 months provided there is no

relapse.

For patients preferring enteric coated prednisolone, the reduction below 10mg should be as follows:

10/7.5mg alternating for 2 months,

then 7.5mg daily for 1-2 months,

then 7.5/5mg alternating for 1-2 months,

then 5mg daily for 1-2 months, etc.

Some patients may benefit from a more gradual glucocorticosteroid taper, or a period of treatment at a stable dose, such as 5 mg prednisolone for 3 months. There are also some patients who will require long-term low-dose glucocorticosteroid therapy. The dose may also need adjustment, due to disease severity, comorbid factors (e.g. diabetes, cardiorespiratory or renal disease), fracture risk, patient wishes and adverse events.

***************

This from aafp.org -

Corticosteroid Therapy for Giant Cell Arteritis

Starting dosagePrednisone in a dosage of 40 to 60 mg per day until the ESR is normal and the patient is asymptomatic

Dosage reductionDecrease the dosage by 2.5 to 5 mg per day every two weeks to a dosage of 20 mg per day;

then decrease the dosage by 10 percent every 2 weeks to a dosage of 10 mg per day;

then decrease the dosage by 1 mg per day every 4 weeks.

Or

Decrease the dosage by 10 percent every 2 weeks to a dosage of 10 mg per day;

then decrease the dosage by 1 mg per day every 4 weeks.

Monitoring

Monitor the patient for symptom recurrence throughout the steroid taper; monitor the ESR every 4 weeks for 2 to 3 months, then every 8 to 12 weeks until 12 to 18 months after the cessation of therapy.

ESR = erythrocyte sedimentation rate.

[Spanky2019 in reply to DorsetLady]

Ok, got it. I will be polite but proactive for this tapering schedule. Thank you.

[Hidden]

So far so good. 🤞

[PMRpro Ambassador]

I think the problem with having to start with such high doses of pred and the associated potential adverse effects is what drives the desire to reduce so quickly. The very high doses in GCA are required to cut the inflammation as quickly as possible to reduce the risk of visual loss - and in theory a short time at a very high dose should make a reduction to more normal doses easier. Studies have claimed that an induction of i.v. pulse dosing at 100mg results in easier tapering - it is disputed though. But logically, a short time of very high doses will clear out the accumulated inflammation better, setting a lower baseline.

I do hope it will continue so well.

[SnazzyD]

Glad you’re getting some relief from the hard work aspects of higher Pred.Time will tell. From 40mg I did 5mg over 2 weeks and from 30mg, just 2.5mg because I felt so rubbish with withdrawal. You may well be different but be very aware of your body. The rule of thumb, no more than 10% in no less than 2 weeks, is pretty sound. Generally drops from high doses are easier so don’t get disheartened if you do struggle a bit later on; just slow it down and recover before dropping because then you know it’s withdrawal.

It’s all very well us saying what we would do but you have to have some sort of relationship with your doc. My Reg wasn’t pleased because I ‘should’ have been in high single figures instead of 18mg, but I politely stood my ground. I said I had to balance withdrawal effects between surviving my home life and reduction schedule. I also said that I had reduced without a flare which must be better than the alternative of going back up. He had nothing he could say on that but then tried heavy scare tactics re Pred, yet said to carry on with my schedule as I left. My experience since with different docs is much the same routine. I think I’m down as ‘one of those patients ‘, a price I’m prepared to pay. As long as the prescriptions have kept coming I put up with it, but it’s mainly down to my lovely GP who listens and sees my progress on a regular basis; the proof is in the pudding.

[jinasc]

I had GCA and started on 60mg..............my Rheumy took me down slowly it took from the Feb to Nov to get to 20mg.

The others have covered it - reduction too fast.

One thing I would add is that when you have your eyes tested, check if you have cataracts or the beginning of them - if so and you need spectacles, insist on re-actolite rapide. Pred and Sunshine = growth of cataracts.

[Spanky2019]

Thank you everyone. I trust and appreciate your advice. I see by the posts recovery takes a long time. Guess it hasn't been that long for me- just feels like it. Hope you all have a wonderful day.